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What Are The Symptoms Of ALS?

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Posted on Thu, 13 Nov 2014
Question: I'm a 44 year who has had fasciculations for 5 or 6 weeks now, more often in my arms and hands but also in my thighs, glutes, abdomen, calves and even the area around my knees. Whether it's coincidence or not, they began during a time of great work related fatigue and stress. I saw my PCP a couple of weeks ago and he tested my limb strength as well as conducted a few coordination and reflex tests. He said all looked good. Yet, I have a great fear this could be ALS, especially when researching online. I'm now having difficulty sleeping and a lot of anxiety. The fasciculations have continued on. For every statement that ALS overwhelmingly presents with weakness (even if accompanied by fasciculations), I can still find people claiming they did not note weakness at first. I've also read that ALS typically starts in one area so that initial fasciculations wouldn't present in multiple areas...until I find a case where someone claims it does. Isn't there a fairly common pathology to ALS fascics? Is it realistic to think my initial symptom of ALS, literally the first week, would include fasciculations in multiple muscle groups...even if a few more are in my arms? Thank you!
doctor
Answered by Dr. Dariush Saghafi (32 minutes later)
Brief Answer:
I think it HIGHLY UNLIKELY you have ALS

Detailed Answer:
Good morning. My name is Dr. Saghafi and I am a neurologist from the XXXXXXX OH area of the world.

I understand that you are concerned for having ALS. Just curious, is your awareness more heightened than ever before because of the Bucket challenge or is that just an uncomfortable coincidence?

If you wanted to allay your concerns as MUCH as humanly possible then, in the first place you really should be examined by a neurologist who can verify the results you are claiming were found by your PCP.

I diagnose and manage ALS patients all the time at the VA Medical Center and cannot remember the last time that a patient turned out to have pathologically proven ALS but presented with full strength, reflexes, tone, and muscle mass in all limbs. I'm not saying that type of person doesn't exist but if they do they are LOST, LOST LOST in the crowded streets of Downtown Upper Volta I think.....

Seriously, I would not worry about those kinds of miniscule odds....Here, think of this...it would be MORE LIKELY that politicians, en masse, would suddenly become ethical, smart, thrifty, and genuinely concerned about respecting and upholding constitutional rights of all Americans and doing things for the public good than for you to come down with a diagnosis of ALS based on your twitches and normal everything else as tested by your PCP! Pretty small odds, huh??

You may actually have a condition called Benign Fasciculation Syndrome or BFS. That to me is more likely in your case AT THIS MOMENT in time than anything else. I'm not saying you couldn't develop ALS (although you're also a little bit on the younger side for it)....most ALS'ers are in their late 50's, early 60's. But anything, is it just theoretically possible? Well, I can't say no....but isn't also theoretically possible that as soon as you walk out on your porch a piece of space debris from some dead satellite could come down on your head and waste you? Isn't it? Sure is...in fact, they say there's more space junk circling the globe than cars at the Indy 500....oooohhh wheeeee.....a lot of junk and that something is always coming into the atmosphere every second....so are you going out on your porch today? Tomorrow Next week? I think you are....yet the chance is still present.

I really wouldn't focus so much on the improbable and just go with what you know. You've got fasciculations in the limbs and shoulder girdle in the face of normal strength. By definition that is BFS until proven otherwise. If you are really still having issues with it then, ask your PCP to send you on to a GOOD NEUROLOGIST to give you the once over but good and if you're a real glutton for punishment to push the point home.....ask if he's willing to hook you up to his Middle Ages torture box called the EMG/NCV test. Because if that comes out spankin' clean then, that's the deal breaker in terms of testing is concerned.

And yes there are some articles in the literature that claim there is a morphological difference from an electrical point of view in fasciculations produced by ALS vs. BFS. Not all neuromuscular experts or EMG'ers agree with that conjecture but it is written on so that could be another potential way of distinguishing what you have from something else.

BTW, is there any family history of either fasics like what you have....or ALS?

If any of the information I've asked or provided has been useful to further your understanding or give you ideas as to which direction to turn next and you'd like to CLOSE THIS QUERY then, could you do me a favor and leave some brief feedback with a STAR RATING for the quality of the response.

Alternatively, we could continue this conversation and you may upload information if available such as lab tests, etc. and I would be happy to review them.

Please feel free to contact me at any time to ask more questions about this or any other topic you would like by using the following link:

http://doctor.healthcaremagic.com/Funnel?page=askDoctorDirectly&docId=68474

This query required 21 minutes of physician specific time to review, research, and compile the final draft for envoy.
Above answer was peer-reviewed by : Dr. Vinay Bhardwaj
doctor
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Follow up: Dr. Dariush Saghafi (1 hour later)
Thank you for your response, Doctor. It was both informational and colorful!

No family history.

My twitching started one night about 5 weeks ago with a quick twitch in my left arm and then another a few minutes later in my right thigh. As I mentioned, neither my PCP nor I have detected any weakness. I can handle my luggage with ease, run up the staircase and my coordination is very good.

I didn't think much of my fasciculations until I Googled it and saw ALS at every turn. My anxiety and stress are now through the roof.

Two final questions:
1. If ALS typically begins in one limb (or one area), wouldn't the associated fasciculations be in that muscle group, at least initially? The very first day I noticed anything included twitches in different areas. Widespread fasciculations would be a result of ongoing ALS, not an initial presentation, no?

2. Does the fact that my twitches seem more active at night, as does my anxiety, mean anything? I'm hyper aware of my body now and have very few twitches during the day. At night I definitely have a good bit. The worst seem to be as I'm dozing off, in that semi-conscious state.
Thank you, XXXXXXX

doctor
Answered by Dr. Dariush Saghafi (2 hours later)
Brief Answer:
Well then..THANK YOU VERY MUCH GOOGLE---

Detailed Answer:
So now we know who to blame, right? Google....not you, the nervous Nellie who loves to read things he shouldn't be reading without a medical license in his pocket...or at least a degree!

Reminds me of a joke---you'll like this one....

This Neurosurgeon one day calls on a plumber to fix the kitchen sink...all plugged up or something. So the plumber comes over within the hour...enters this Neurosurgeon's house...plumber, pretty unassuming guy, got his tool box, baseball cap, smokin' a skokie.....the Neurosurgeon directs him to the kitchen sink and asks him to please do his best to make it quick. He's got to be in the OR within the hour. Plumber nods in approval....tells him he'll be done in a jiffy.

Climbs under the sink and starts bangin away, takin' stuff apart, changing pieces, finally comes out after about 30 min. and says, "All done....hand the surgeon the XXXXXXX for like $400.00... The neurosurgeon just about dropped his jaw, "$400.00?? Are you nuts? For 30 min. of work??? Are you crazy or something....look my good man....I'm a neurosurgeon and I only make $400.00/hr. for what I do! You're charging me double of what I even make as a doctor..."

The plumber takes a long pause, puffin on his skokie, takes his baseball cap off and starts scratchin' his head. He looks at the neurosurgeon and says, "400.00 Bucks an hour, huh? Well, that's not bad...not bad at all" said the plumber as he goes on to say, "You know...in fact, that's pretty damn good. When I was a Neurosurgeon I was only makin' $300.00/hr.!"

LOL! Isn't that great? So there you have it the Neurosurgeon who thought he could be a plumber...and he was....but he still had to do his reading, go through his apprenticeship, and then, kiss somebody's butt in the union to get that Neurosurgeon's job!!! LOL.....

Point is, the Internet can be a dangerous place to navigate around and simply peruse for medical information if you don't know what you're really lookin for or how to use what you find. Everyone seems to think that being a doctor is the equivalent of taking a Correspondent's course with the Internet. They check the internet, the symptoms all match up, really? Do they? How does every lay person even know what constitutes a POSITIVE MATCH or not when it comes to lists of symptoms for a particular disease? Get my point. Medicine is an Art and a Science. Angie's Lists are not under discussion here so lay folk really should not "shoot" their anxiety levels through the roof.....if they do, it's not the fault of any disease or disease process.....it's the fault of the person grossly misinterpreting the situation at hand.

Nuff said....moving to your questions because I have to get to Wrestling Practice and take out some of this Internet Grime out of my system....make those college kids pay but good! HAHA!




1. If ALS typically begins in one limb (or one area), wouldn't the associated fasciculations be in that muscle group, at least initially? The very first day I noticed anything included twitches in different areas. Widespread fasciculations would be a result of ongoing ALS, not an initial presentation, no?

>>>>>Not sure what your source is on this statement but ALS does not typically get noticed by patients or even doctors by way of fasciculations. It is typically noticed by muscle weakness, weight loss, and loss of stamina.....fasciculations often times are not even noticed by patients nor even felt. Widespread fascics are not the typical way that ALS presents once it gets to that stage of things but BFS DOES.....Widespread fasciculations in a patient with path proven ALS who has NO signs of weakness, NO signs of loss in stamina, NO breathing swallowing difficulties, NO tripping/stumbling/inability to get in and out of car, .....what else should I throw in so we get the point. THAT IS NOT THE PICTURE OF ALS. That IS the picture of BFS. NEXT>>>>>>

2. Does the fact that my twitches seem more active at night, as does my anxiety, mean anything? I'm hyper aware of my body now and have very few twitches during the day. At night I definitely have a good bit. The worst seem to be as I'm dozing off, in that semi-conscious state.

>>>>>>>Not able to give you any particular meaning to this point that is of any clinical significance. Increased twitchings/fasciculations and so forth happen when people are more anxious, more tired, more fatigued, less well rested, more filled up with caffeine, smoked cigarettes, taken other illicit substances such as cocaine, amphetamines, when they are hypoglycemic, when they are dehydrated, and more fascics and more twitchings can occur throughout day and night based upon side effects of any new or newer medications such as antidepressants, anti-anxiety drugs, drugs to make you more alert, drugs to make you fall asleep...... NEXT>>>>>>>>>>>>
Thank you,


So if you plan on seeing a neurologist about this just to put your mind at ease please let me know the upshot.

If any of the information I've asked or provided has been useful to further your understanding or give you ideas as to which direction to turn next and you'd like to CLOSE THIS QUERY then, could you do me a favor and leave some brief feedback with a STAR RATING for the quality of the response.

Alternatively, we could continue this conversation and you may upload information if available such as lab tests, etc. and I would be happy to review them.

Please feel free to contact me at any time to ask more questions about this or any other topic you would like by using the following link:

http://doctor.healthcaremagic.com/Funnel?age=askDoctorDirectly&docId=68474

This query required 60 minutes of physician specific time to review, research, and compile the final draft for envoy.
Above answer was peer-reviewed by : Dr. Vinay Bhardwaj
doctor
default
Follow up: Dr. Dariush Saghafi (1 hour later)
Thank you, Doctor! I think reading the "Ice Bucket Challenge" originator's, Pete Frates', own account of first noting twitching in his arms and chest before noting declining skills over the next few months really put it in my head that twitching is an initial symptom.

Enjoy the wrestling and thank you!
XXXXXXX
doctor
Answered by Dr. Dariush Saghafi (15 hours later)
Brief Answer:
You are VERY welcome

Detailed Answer:
Very sad story what happened with Pete Frates, isn't it?

Here are a few tidbits I pulled from very reputable medical websites in order to show that TWITCHING in the face of preservation of MUSCLE STRENGTH and bulk should not raise the red flag of ALS before anything else:

1. Muscle weakness is a hallmark initial sign in ALS, occurring in approximately 60% of patients (ALS Association).

2. The earliest symptoms of ALS are typically obvious weakness and/or muscle atrophy. Other presenting symptoms include trouble swallowing, cramping, or stiffness of affected muscles; muscle weakness affecting an arm or a leg; and/or slurred and nasal speech. (Wikipedia)

3. ALS may be suspected whenever an individual develops insidious loss of function or gradual, slowly progressive, painless weakness in 1 or more regions of the body, without changes in the ability to feel, and no other cause is immediately evident. (emedicine/medscape)

4. It usually presents with problems in dexterity or gait resulting from muscle weakness. (American Family Physician).


Now, to be sure....you will be able to easily go out to any number of websites and return to me with citations which say that Fasciculations are a common symptom in ALS, Fasciculations can be seen early on in the disease process, etc. etc.

But, I repeat-- Fasciculations IN THE PRESENCE OR PRESERVED muscle strength and bulk is a sign of hyersensitive nerves connected to the muscles.....not DETERIORATION of those nerves connected to the muscles which is how ALS operates. In your specific case if fasics were to be the most unusual FIRST manifestation of ALS and if these fasics have now spread to various parts of your body in both upper and lower extremities without any evidence of weakness ensuing anywhere...and after 6 weeks then, that really is, pardon the pun, WEAK for ALS as the most likely diagnosis. And as Campy XXXXXXX would say (he's the voice of the XXXXXXX Cavaliers)....."Get that Weak Stuff Outta' There!" Didn't know if you'd appreciate a little basketball talk in there but it fits with our discussion so, Thank you Mr. Russell! LOL.

Seriously, see how we put that together? Not just interested in the list of potential symptoms but what the evolution, what's the timing, what the sheer likelihood that a person even has ALS in this day and age? 1-2 cases per 100,000 population...not a common problem really...unless you've got it...but hey, we all have to have something at some time...but you get my drift....I just mean to say that ALS is really way down on my list of Favorite Horses in this race. On other day, under other circumstances, maybe not...in fact, I diagnose ALS patients at the rate of about 3 per month at the VA Medical Center so I'm not afraid of making the diagnosis when all the pieces are present.

In your case, I am sorry sir....but I cannot give ALS TODAY!

BFS on the other hand is exactly the disease we talk about when we refer to HYPERSENSITIZATION of the muscle nerve connections and this hypersensitization can be on the basis of all sort of insundry issues...too numerous to list here unless you wish to open 3 or 4 more queries...which will keep me writing until I start collecting Medicare in another decade or so!

Point made, right?

I wish you all the best...that is to you, to your family, and to your widespread fasciculations which I hope quiet down soon enough or that you can find the cause to if you start reading a little about BFS....or talk to your doctor or neurologist who can further guide you on that topic.

So, if there are no further comments or questions on this topic may I ask you to leave just a little written feedback on how these answers faired (or is it fared?) for your purposes. Keeps the management feeding me bags of peanuts while I sit here and toil away writing answers....we are allowed BR breaks every now and again...but my bladder is well trained....I think I've gone 5 questions consecutively without a BR break! HA!

And if you ever do want to open up a new query on this or any other topic in Medicine (Hey, I got a million answers...not just in Neurology mind you....I love dabbling in nasal secretions, hair loss in various insundry places, and some of the ugliest toes and feet you've seen on some of the hottest chicks!! LOL!) so if it's medical and it's a question, I'll take a stab at it my new simplified URL.

Check me out at: bit.ly/drdariushsaghafi

This query required 37 minutes of physician specific time to review, research, and compile the final draft for envoy.
Above answer was peer-reviewed by : Dr. Ashwin Bhandari
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Dr. Dariush Saghafi

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Practicing since :1988

Answered : 2473 Questions

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What Are The Symptoms Of ALS?

Brief Answer: I think it HIGHLY UNLIKELY you have ALS Detailed Answer: Good morning. My name is Dr. Saghafi and I am a neurologist from the XXXXXXX OH area of the world. I understand that you are concerned for having ALS. Just curious, is your awareness more heightened than ever before because of the Bucket challenge or is that just an uncomfortable coincidence? If you wanted to allay your concerns as MUCH as humanly possible then, in the first place you really should be examined by a neurologist who can verify the results you are claiming were found by your PCP. I diagnose and manage ALS patients all the time at the VA Medical Center and cannot remember the last time that a patient turned out to have pathologically proven ALS but presented with full strength, reflexes, tone, and muscle mass in all limbs. I'm not saying that type of person doesn't exist but if they do they are LOST, LOST LOST in the crowded streets of Downtown Upper Volta I think..... Seriously, I would not worry about those kinds of miniscule odds....Here, think of this...it would be MORE LIKELY that politicians, en masse, would suddenly become ethical, smart, thrifty, and genuinely concerned about respecting and upholding constitutional rights of all Americans and doing things for the public good than for you to come down with a diagnosis of ALS based on your twitches and normal everything else as tested by your PCP! Pretty small odds, huh?? You may actually have a condition called Benign Fasciculation Syndrome or BFS. That to me is more likely in your case AT THIS MOMENT in time than anything else. I'm not saying you couldn't develop ALS (although you're also a little bit on the younger side for it)....most ALS'ers are in their late 50's, early 60's. But anything, is it just theoretically possible? Well, I can't say no....but isn't also theoretically possible that as soon as you walk out on your porch a piece of space debris from some dead satellite could come down on your head and waste you? Isn't it? Sure is...in fact, they say there's more space junk circling the globe than cars at the Indy 500....oooohhh wheeeee.....a lot of junk and that something is always coming into the atmosphere every second....so are you going out on your porch today? Tomorrow Next week? I think you are....yet the chance is still present. I really wouldn't focus so much on the improbable and just go with what you know. You've got fasciculations in the limbs and shoulder girdle in the face of normal strength. By definition that is BFS until proven otherwise. If you are really still having issues with it then, ask your PCP to send you on to a GOOD NEUROLOGIST to give you the once over but good and if you're a real glutton for punishment to push the point home.....ask if he's willing to hook you up to his Middle Ages torture box called the EMG/NCV test. Because if that comes out spankin' clean then, that's the deal breaker in terms of testing is concerned. And yes there are some articles in the literature that claim there is a morphological difference from an electrical point of view in fasciculations produced by ALS vs. BFS. Not all neuromuscular experts or EMG'ers agree with that conjecture but it is written on so that could be another potential way of distinguishing what you have from something else. BTW, is there any family history of either fasics like what you have....or ALS? If any of the information I've asked or provided has been useful to further your understanding or give you ideas as to which direction to turn next and you'd like to CLOSE THIS QUERY then, could you do me a favor and leave some brief feedback with a STAR RATING for the quality of the response. Alternatively, we could continue this conversation and you may upload information if available such as lab tests, etc. and I would be happy to review them. Please feel free to contact me at any time to ask more questions about this or any other topic you would like by using the following link: http://doctor.healthcaremagic.com/Funnel?page=askDoctorDirectly&docId=68474 This query required 21 minutes of physician specific time to review, research, and compile the final draft for envoy.